Lack of patient-clinician concordance in cancer patients: Its relation with patient variables

Abstract

Context

Patients with cancer are bothered by its diagnosis, treatment, and associated uncertainty. Lack of concordance (LOC) of patients’ reporting of their symptoms and quality of life (QOL) with that of their clinicians has been observed in cancer care. However, information regarding the reporting of patients’ bother due to aspects of cancer experience and their clinicians’ assessment is lacking.

Objectives

To describe cancer patients’ bother due to aspects of their disease experience and explore the concordance (LOC) or a lack thereof between patients’ and clinicians’ reporting of patients’ bother and factors associated with it.

Methods

Data from a prospective study of cancer patients’ symptoms was analyzed. LOC was defined as any discrepancy between patient-clinician pairs in reporting patients’ bother due to disease, cancer treatment, comorbidity, and side-effects of symptom management. The relation of LOC to patients’ quality of life (QOL) and distress was also explored.

Results

Of the 2597 patients analyzed, a perfect concordance was observed in 37%–42%. Clinicians underestimated the severity of bother in 62%–76% of discordant cases. LOC was significantly associated with patient-reported distress and poor QOL. Referral for symptom management was associated with the clinician’s rating of patients’ bother, and LOC was associated with likelihood of poor compliance with recommendations for symptom management. Conclusion: Majority of clinicians tended to underestimate cancer patients’ bother and this is associated with poor QOL of cancer patients and their distress. Future studies should examine the LOC and its correlates to confirm the results of this study.

Introduction

Research has documented that cancer patients are bothered by cancer diagnosis, associated symptoms, side effects of its treatment and the uncertain course of the disease; they react in various ways which also impact their tolerance/acceptance of the treatment (1). The meaning of the word “bother” according to Merriam Webster Dictionary is to annoy, “interference with comfort or peace of mind”, or to be anxious or concerned (2). Distress related to cancer, on the other hand, is defined as an “unpleasant emotional experience of a psychological, social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.(3)” In medical research, bother has been defined as “distress patients experience as a consequence of functional detriments and the degree to which they consider the dysfunction to be problematic” (4). Although the domain of bother is close to “distress”, it has been explored as a distinctive outcome in a few studies of urologic diseases (4–6) and vasomotor symptoms as a part of the assessment tool (7) while “distress” has been studied in numerous situations along with associated endocrine changes. In urologic studies, bother has been assessed as a single item generating a “bother score” which has been shown to be a valid, reliable, and sensitive measure of the need for treatment and its outcomes such as in patients with benign prostate hyperplasia (8, 9). In oncology literature, however, little information exists on how much bother patients with other types of cancer experience and awareness of it among their clinicians.

Several studies of cancer have shown that the clinicians’ reports of their patients’ symptoms more often does not agree with the patients’ reports of their own symptoms (10–15). Patients report symptoms more frequently and earlier in time than their clinicians (12) and they tend to report greater severity of symptoms than their clinician (11,12,16,17). Cancer patients’ quality of life (QOL) (18–20), adverse events in cancer clinical trials (12, 15), and distress in adolescents (21) and adults with cancer (22) have also shown discrepancies in patients’ and clinicians’ reports. However, it is not known whether discrepancy also exists in reporting of the level of bother due to aspects of cancer experience.

Lower socioeconomic status and less education are associated with LOC in reporting of patient distress, perceived social support, and issues regarding end-of-life care of cancer patients (22, 23). There is also evidence of association of patient’s gender and race with patient-clinician interaction (24). However, it is not known whether these factors affect the reporting of cancer patients’ bother by the patients themselves and by their clinicians. Some studies have shown association of lack of concordance with treatment non-adherence such as among patients with inflammatory bowel disease (25). It is not known whether discrepancy between patient’s and clinician’s reporting of their bother is related to compliance with cancer treatment. Furthermore, it is not known whether such discrepancy has any effects on cancer patients’ QOL, their distress levels, or their cancer treatment. Although there may never be a perfect agreement, a clear understanding of the factors associated with patient-clinician discrepancy or LOC in reporting of patient’s bother is important to reduce LOC in cancer.

The purpose of this secondary analysis of data from a large, multicenter, prospective study was 1) to describe the patients’ bother due to their cancer experience, 2) to explore the patient-clinician discrepancy (LOC) in the assessment of patients’ bother due to the difficulties related to their cancer experience, and 3) to identify the factors associated with LOC. We also explored the association of LOC in reporting of patients’ bother with their QOL, their clinicians’ referral for management of symptom/side effects of treatment and patients’ compliance with symptom management recommendations.

Methods

Patients and procedures

The current report is a secondary analysis of the data from Symptom Outcomes and Practice Patterns (SOAPP), a prospective multi-site study. The primary objective of the SOAPP study was to describe the prevalence and severity of physical and psychological symptoms experienced by patients with invasive cancer of the breast, colorectal, prostate or lung and interference due to such symptoms. All patients with invasive cancer, visiting the institutions that were members of the Eastern Cooperative Oncology Group (ECOG) ECOG, who were aged 18 years or older and provided written informed consent during their initial clinic appointments, were recruited. The member institutions of ECOG include university schools of medicine, academic medical centers, community hospitals, clinics, physician and imaging practices. A total of 3106 patients were accrued to the SOAPP study through 38 member institutions of ECOG between March 2006 and May 2008. Out of these, data of 2597 patients (83.6%) was included in the current analyses.

Data collection

Participants completed the demographic and disease questionnaire at the initial visit and symptom assessment at the initial visit and follow-up visit 28–35 days later. Their treating clinicians who were also interviewed at the same time points included physicians, nurses, nurse-practitioners, and residents/fellows. Those patients who could not fill out the study forms independently (e.g., language or literacy difficulty, or disability) received assistance from staff, family/friends, or others. In addition, patients who were too ill to complete the follow-up questionnaire were given the option to mail the questionnaire to their clinic by day 42 after the initial visit. The SOAPP study was approved by the institutional review boards at each registering institution participating in the ECOG. The details about the study design have been published elsewhere (26); the protocol and case report forms are accessible on the study web site (www.ecogsoapp.org).

Measures

1. Information on the patient’s demographic and disease characteristics, including disease stage, disease status, and current therapy and ECOG performance status was collected.

2. Bother: Both the patients and their treating clinicians rated how much patients were bothered by difficulties related to cancer, its treatment, comorbidities, and side effects from medicines for symptom management on a 5-point Likert-scale with 0 representing “not at all” and 4 representing “extremely” (Table 1). Concordance/discordance in the rating of bother for the four areas were assessed for each of patient-clinician pairs. Such patient-clinician discrepancy has been reported in the literature as “discordance” or “concordance”; in this paper the term – lack of concordance or LOC is used to indicate such discrepancy.

3. Distress: Patients self-reported their distress symptoms using an item-response asking about distress, from a validated measure, the M. D. Anderson Symptom Inventory (MDASI). It is a list of 13 symptoms modified from a measure created at the M. D. Anderson Cancer Center and used in a number of research studies (27). It consists of a series of statements in which the severity of each of the 13 symptoms “at its worst” is indicated by response options on an 11-point scale (0 = “not present” to 10 = “as bad as you can imagine”). The single items have been shown to be valid screening tool. The item on “distress” was used in this study; the correct response on the Likert scale was the distress rating; it has shown moderate correlation coefficients with mental health. The patients’ distress ratings of 0–4 were categorized as none/mild and 5–10 as moderate/severe distress based on suggested intensity categories; this categorization has been used in earlier studies (27–30).

4. QOL: Patients also rated their overall QOL via a 5-point global item (1=Very poor, 2=Poor, 3=Fair, 4=Good and, 5=Excellent) at the initial assessment in the SOAPP study.

5. Information on whether the patient was referred for symptom management, the services including: Pain, Palliative Care, Combined Pain and Palliative Care, Psychiatry, Physical Therapy/Occupational Therapy, Nutrition, Chaplain, Wound/Enterostomal, Speech Therapy, Practitioner of Complementary Therapy (Yoga, massage, aromatherapy, etc.), Radiation Therapy Service). This was collected via the clinician on-study form during the initial assessment. The optional responses to this question were: Yes/No.

6. Compliance: At the follow-up assessment, the clinician reported patient’s compliance with symptom management recommendation via a 3-point response options (1=perfect, 2=acceptable and 3=poor).

Table 1.

Questions about patients’ bother answered by patients and clinicians

Questions answered by the patients about their “bother”	Questions answered by the clinicians about patients’ “bother”
Overall, how much are you bothered by difficulties related to health problems other than cancer? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely	Overall, how much do you think this patient is bothered by difficulties related to comorbidities other than cancer (or the primary disease for which you are seeing the patient)? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely
Overall, how much are you bothered by difficulties related directly to cancer? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely	Overall, how much do you think this patient is bothered by difficulties related directly to cancer (or the primary disease for which you are seeing the patient)? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely
Overall, how much are you bothered by difficulties related to the treatment of cancer (i.e. chemotherapy or other systemic therapy, radiation therapy, surgery)? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely	Overall, how much do you think this patient is bothered by difficulties related to treatment of cancer (i.e. chemotherapy or other systemic therapy, radiation therapy, surgery)? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely
Overall, how much are you bothered by side effects from medications used to treat pain or other symptoms? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely	Overall, how much do you think this patient is bothered by side effects from medications used to treat pain or other symptoms? 0=Not at all 1=A little bit 2=Moderately 3=Quite a bit 4=Extremely

Statistical analysis

Descriptive analysis of patients’ demographic and disease characteristics was conducted. Concordance was defined as complete agreement in the Likert response categories (i.e. no difference in the patient-clinician’s ratings), whereas lack of concordance/LOC was defined as any disagreement (i.e. difference between the two ratings was not equal to zero) in response categories of patient-clinician pair. Relative to patient’s rating, clinicians could over-estimate or under-estimate the severity of patient’s bother which was considered to be a lack of concordance/LOC. The χ² test was used to examine the association between LOC and patient characteristics. Multivariable logistic regression models were constructed to explore baseline factors associated with LOC. Additional multivariable logistic models were constructed to examine how LOC was related to patient self-rated QOL, patient’s compliance with symptom management recommendations and referral for symptom management. All tests were two-sided and a P value <0.05 was considered statistically significant. STATA 11.2 (StataCorp. 2009. Stata Statistical Software: Release 11. College Station, TX: StataCorp LP.) was used for all statistical analyses.

Results

Patient characteristics and bother by cancer experience

Patient characteristics are presented in Table 2. The mean age of patients was 60.8 years (SD=12.3) and 61% had ECOG performance status of 0. The majority were Caucasian (88%) and female (72%). Breast cancer patients constituted 52.4% of the sample. Most participants (75%) were currently receiving treatment; 39% had complete resolution of the disease while 42.5% had stable disease. About 17% reported moderate/severe distress and 27% reported poor QOL. More than 75% of patients were bothered by cancer and its treatment, 65% of patients were bothered by comorbidity and 59% patients were bothered by side effects of pain and other symptom management. About 9% were referred for symptom management services and a perfect compliance with symptom management was observed in 52%.

Table 2.

Demographics and disease characteristics (N=2597)

Variable	N	%
Age in years (Mean and SD)	60.78	12.27
<45	276	10.6
45–60	933	35.9
60–75	1010	38.9
≥75	378	14.6
Gender
Female	1861	71.7
Male	736	28.3
Race
White	2260	88.0
Black	265	10.3
Other	43	1.7
Race/ethnicity
Others	418	17.4
Non-Hispanic white	1983	82.6
ECOG PS
0	1570	60.6
1	869	33.6
2–4	150	5.8
Site
Breast	1361	52.4
Colorectal	580	22.3
Prostate	240	9.2
Lung	416	16.0
Current status of disease
CR	1008	39.1
PR	112	4.3
SD	1097	42.5
PD	363	14.1
Current stage of disease
NED	1143	44.2
Local/regional	472	18.2
Mets	819	31.7
Mets & local/regional	154	6.0
Patient currently receive therapy
No	645	24.8
Yes	1952	75.2
Prior chemo/immuno/horm therapy
No	981	37.8
Yes	1615	62.2
Prior radiation therapy
No	1481	57.5
Yes	1096	42.5
Number of medication currently taking
0–4	745	31.3
5–9	1058	44.4
>=10	578	24.3
Distress
No/mild	2135	82.9
Moderate/severe	441	17.1
QOL
Good/excellent	1890	73.0
Fair/poor/very poor	699	27.0
Compliance with symptom treatment recommendations*
Acceptable/needs improvement	941	48.1
Perfect	1016	51.9
Referral for symptom management
No	2356	90.7
Yes	241	9.3
Patient reported bother by cancer
Not at all	655	21.3
A little bit	926	30.0
Moderately	803	26.1
Quite a bit	557	18.1
Extremely	142	4.6
Patient reported bother by cancer treatment
Not at all	752	24.5
A little bit	867	28.2
Moderately	789	25.7
Quite a bit	524	17.0
Extremely	144	4.7
Patient reported bother by comorbidity
Not at all	1083	35.0
A little bit	996	32.2
Moderately	638	20.6
Quite a bit	315	10.2
Extremely	59	1.9
Patient reported bother by side effects of symptom management
Not at all	1268	41.2
A little bit	855	27.8
Moderately	597	19.4
Quite a bit	281	9.1
Extremely	80	2.6

ECOG PS: Eastern Cooperative Oncology Group performance score.

CR: complete disappearance; PR: partial response; SD: stable disease; PD: progressive disease; NED: no evidence of disease; Mets: metastases;

^*: this data was collected at follow up visit. All other variables were collected at initial assessment.

Proportion of LOC

The proportions of concordance and LOC are depicted in Table 3. Overall, a perfect concordance between the patients’ and clinicians’ responses to patients’ bother was observed in 37%–42% of the patients. In the discordant cases, the majority of clinicians (62%–76%) underestimated the severity of patient’s bother.

Table 3.

Proportion of concordance/LOC, distress, stage of disease and treatment status

	Total		Distress					Disease stage					Current therapy
			0–4		5–10			Non-advanced		Advanced			No		Yes
Discordance by bother due to	N	%	N	%	N	%	P-val	N	%	N	%	P-val	N	%	N	%	P-val
Disease							<0.001b					0.0528b					0.1191b
Concordance	939	36.6	805	38.1	128	29.4		605	38.0	330	34.2		250	39.2	689	35.8
LOC	1626	63.4	1306	61.9	308	70.6		987	62.0	635	65.8		388	60.8	1238	64.2
ClMore	487	30.0	421	32.2	61	19.8	<0.001a	214	21.7	272	42.8	<0.001a	92	23.7	395	31.9	0.002a
ClLess	1139	70.0	885	67.8	247	80.2		773	78.3	363	57.2		296	76.3	843	68.1
Cancer treatment							<0.001b					0.0037b					0.004b
Concordance	979	38.2	851	40.4	126	28.8		642	40.4	335	34.7		272	43.0	707	36.6
LOC	1583	61.8	1256	59.6	312	71.2		946	59.6	631	65.3		360	57.0	1223	63.4
ClMore	600	37.9	503	40.0	90	28.8	<0.001a	347	36.7	251	39.8	0.214a	120	33.3	480	39.2	0.042a
ClLess	983	62.1	753	60.0	222	71.2		599	63.3	380	60.2		240	66.7	743	60.8
Side effect of symptom management							<0.001b					<0.0001b					<0.001b
Concordance	1081	42.2	958	45.4	117	26.9		723	45.5	357	37.0		338	53.1	743	38.5
LOC	1483	57.8	1154	54.6	318	73.1		867	54.5	609	63.0		298	46.9	1185	61.5
ClMore	350	23.6	286	24.8	62	19.5	0.049a	184	21.2	166	27.3	0.007a	58	19.5	292	24.6	0.060a
ClLess	1133	76.4	868	75.2	256	80.5		683	78.8	443	72.7		240	80.5	893	75.4
Comorbidity							<0.001b					<0.0001b					0.0874b
Concordance	1056	41.0	910	43.0	139	31.7		701	43.9	350	36.1		281	43.9	775	40.1
LOC	1518	59.0	1208	57.0	299	68.3		895	56.1	620	63.9		359	56.1	1159	59.9
ClMore	567	37.4	462	38.2	100	33.4	0.124a	297	33.2	268	43.2	<0.001a	121	33.7	446	38.5	0.102a
ClLess	951	62.6	746	61.8	199	66.6		598	66.8	352	56.8		238	66.3	713	61.5

Advanced disease included Metastasis and LR+Metastasis, Non-advanced disease included NED (no evidence of disease) and Local/Regional.

LOC: lack of concordance; CLMore: clinician over-estimated the severity of patient’s bother according to patient’s self reported rating; CLLess: clinician under-estimated the severity of patient’s bother according to patient’s self reported rating.

^a: Concordance versus LOC in all patients, using Chi square test

^b: CLMore versus CLLess using Chi square test

The proportion of LOC was significantly higher in patients with moderate/severe distress compared to those with no/mild distress (p<0.001 for all four areas of difficulties related to cancer, its treatment, comorbidities, and side effects from medicines for symptom management,). When there was LOC, clinicians underestimated the severity of bother due to disease, cancer treatment, and side effects of symptom treatment in patients with moderate/severe distress compared to those with no/mild distress (Table 3).

The proportions of LOC regarding bother due to cancer treatment, side effects of symptom treatment, and comorbidity were significantly higher in patients with advanced disease (patients with evidence of metastases or local/regional and metastatic disease) compared to patients with non-advanced disease (patients with no evidence of disease or local/regional disease) (p<.001 for all). Patients receiving treatment currently had significantly higher proportions of LOC regarding bother due to cancer treatment and side effects of treatment for symptom compared to patients without current therapy (p<0.01 for both). However, among patients with LOC, the proportion of clinicians’ underestimation of patients’ bother due to cancer, comorbidities and side effects of treatment of symptoms was significantly higher in patients with early stage disease compared to patients with advanced disease. Clinicians were more likely to underestimate the participants’ bother due to cancer and cancer treatment in patients not receiving current therapy (Table 3).

Factors associated with LOC

Table 4 summarizes the multivariable logistic regression results for LOC and distress, covariates being age, race/ethnicity, gender; disease site, disease status, disease stage, ECOG Performance Status, current therapy. Patient self-reported distress was significantly associated with higher odds of LOC regarding bother in all four domains (OR=1.4 (CI 1.01, 1.80) for cancer, OR=1.5 (CI 1.25, 188) for cancer treatment, OR=1.5, (CI1.26, 1.79) for comorbidities, and OR=1.9, (CI 1.48, 2.42) for side effects of symptom treatment,). As the confidence intervals do not include zero the OR were significant at P< .05. Patients on current treatment had significantly higher odds of LOC regarding bother due to cancer treatment and side effects of symptom treatment. Advanced disease was associated with higher odds of LOC regarding bother due to comorbidities.

Table 4.

Logistic regression analysis for LOC

Variables	LOC¶-bother due to Cancer				LOC¶-bother due to Cancer treatment				LOC¶-bother due to side effects				LOC¶-bother due to comorbidities
	OR	95%CI		P value	OR	95%CI		P value	OR	95%CI		P value	OR	95%CI		P value
Race (Non-Hispanic White v others)	0.85	0.64	1.12	0.253	0.81	0.65	0.99	0.042	0.87	0.70	1.08	0.196	0.83	0.60	1.14	0.254
Age
<45 (ref.)	1.00				1.00				1.00				1.00
45–60	0.89	0.70	1.13	0.347	0.87	0.65	1.15	0.320	0.89	0.66	1.19	0.425	1.22	0.91	1.63	0.180
60–75	0.75	0.60	0.95	0.017	0.76	0.57	1.01	0.062	0.77	0.56	1.06	0.109	1.14	0.86	1.52	0.364
≥75	0.72	0.53	0.97	0.033	0.85	0.63	1.16	0.314	0.87	0.57	1.34	0.535	1.34	0.98	1.83	0.070
ECOG PS
0 (ref.)	1.00				1.00				1.00				1.00
1	1.21	0.98	1.50	0.082	1.23	1.01	1.49	0.035	1.40	1.12	1.75	0.004	1.29	1.03	1.61	0.024
2–4	0.93	0.64	1.35	0.687	1.43	0.99	2.06	0.056	1.66	0.98	2.81	0.060	1.66	1.11	2.48	0.014
Disease site
Breast (ref.)	1.00				1.00				1.00				1.00
Colorectal	1.27	1.06	1.53	0.011	1.01	0.82	1.23	0.959	1.05	0.81	1.36	0.717	1.12	0.92	1.35	0.263
Prostate	1.26	0.92	1.72	0.152	0.99	0.72	1.35	0.935	0.68	0.48	0.96	0.030	1.39	0.97	1.98	0.071
Lung	1.22	0.95	1.58	0.123	1.05	0.81	1.36	0.735	1.29	0.96	1.73	0.093	1.36	1.16	1.59	<0.001
Disease status
CR (ref.)	1.00				1.00				1.00				1.00
PR	1.00	0.65	1.53	0.985	1.24	0.86	1.80	0.246	1.05	0.75	1.47	0.792	0.68	0.46	0.99	0.045
SD	1.14	0.97	1.35	0.118	1.18	0.92	1.52	0.196	1.33	1.04	1.70	0.022	0.78	0.64	0.96	0.019
PD	1.01	0.75	1.35	0.966	1.38	0.99	1.94	0.058	1.41	1.05	1.89	0.022	0.80	0.55	1.16	0.239
Disease stage
Non-advanced (ref.)	1.00				1.00				1.00				1.00
Advanced	1.05	0.83	1.32	0.691	0.95	0.74	1.22	0.686	0.91	0.67	1.22	0.514	1.37	1.08	1.74	0.010
Current therapy
No (ref.)	1.00				1.00				1.00				1.00
Yes	1.12	0.87	1.44	0.390	1.21	1.01	1.44	0.041	1.70	1.39	2.10	<0.001	1.19	0.99	1.43	0.058
Distress
0–4 (ref.)	1.00				1.00				1.00				1.00
5–10	1.35	1.01	1.80	0.042	1.54	1.25	1.88	<0.001	1.89	1.48	2.42	<0.001	1.50	1.26	1.79	<0.001

OR: odds ratio; CI – confidence interval; yrs – years; CR – complete disappearance; PR – partial response; SD – stable disease; PD – progressive disease; NED – no evidence of disease; ECOG – Eastern Cooperative Oncology Group; PS – ECOG performance score; ref - referent.

^¶LOC (Lack of concordance) was the outcome variable and coded as LOC=1 and concordance=0

Association between LOC and compliance with symptom treatment and QOL

Overall, LOC was associated with higher odds of poor compliance with symptom treatment recommendations after adjusting for the covariates being age, race/ethnicity, gender; disease site, disease status, disease stage, ECOG Performance Status, current therapy, but it did not reach statistical significance (Table 5). The odds of poor QOL was statistically significantly greater in patients with LOC in bother due to treatment (OR = 1.5 (CI 1.35, 1.78)), treatment for side effects (OR = 1.8 (CI 1.47, 2.22)), and comorbidity (OR = 1.5 (CI 1.20. 1.90)), and marginally significant for LOC in bother due to cancer (OR=1.2 (CI 0.98 and 1.55)), after adjusting for the covariates (Table 5).

Table 5.

Adjusted ORs and 95% CIs for LOC in predicting compliance with symptom treatment and QOL

Predictor: LOC (LOC=1, concordance=0)	Outcome Variable: Compliance (acceptable/need improvement=1, perfect=0)	Outcome Variable: QOL (poor=1, good=0)
LOC – bother due to cancer	1.13 (0.93, 1.38)	1.23 (0.98, 1.55)
LOC – bother due to cancer treatment	1.12 (0.91, 1.38)	1.54 (1.34, 1.78)*
LOC – bother due to side effects	1.17 (0.97, 1.41)	1.80 (1.47, 2.22)*
LOC – bother due to comorbidities	1.25 (0.98, 1.60)	1.50 (1.20, 1.90)*

Adjusting variables included in the multivariable logistic models for treatment compliance and QOL: age, race/ethnicity, gender; disease site, disease status, disease stage, ECOG Performance Status, current therapy.

OR: odds ratio; CI – Confidence interval; QOL – Quality of Life; LOC – Lack of Concordance

^*: p <0.001.

Severity of bother and referral to symptom management

Table 6 shows that whether a patient was referred for symptom management was associated with how clinicians rated the severity of bother. However, the patient’s rating of their bother had no association with whether he/she would be referred to any symptom management service after adjusting for the covariates: age, race/ethnicity, gender; disease site, disease status, disease stage, ECOG Performance Status, current therapy.

Table 6.

Adjusted ORs and 95% CIs for LOC in predicting referral for symptom management^£ (yes=1, no=0)

Predictor	Clinician’s report of severity of bother¶	Patient’s report of severity of bother¶
Bother due to cancer	1.36 (1.16, 1.61)**	1.07 (0.94, 1.23)
Bother due to cancer treatment	1.22 (1.06, 1.43)*	1.05 (0.88, 1.27)
Bother due to side effects	1.54 (1.29, 1.83)**	1.08 (0.93, 1.26)
Bother due to comorbidities	1.72 (1.50, 1.98)**	1.04(0.91, 1.17)

^£Dependent variable was referral for symptom management. Clinician was asked whether patient was referred to any of a total of 12 different symptom management services. The dependent variable was coded yes if patient was referred to ≥1 service, others coded 0.

^¶Both patient’s and clinician’s report of severity of bother were included in the logistic model as independent variables (continuous variables). Same set of adjusting variables included in the multivariable logistic models: age, race/ethnicity, gender; disease site, disease status, disease stage, ECOG Performance Status, current therapy.

OR: odds ratio; CI – Confidence interval; LOC – Lack of Concordance

^**: p <0.001;

^*: p <0.01;

Discussion

We report the extent of bother that patients with cancer experience due to difficulties of the disease, cancer treatment, treatment of symptoms, and due to the presence of comorbidities. Although a perfect agreement between all patients’ and the clinicians’ assessment was not the expectation, this study provides evidence of lack of concordance (LOC) in patients’ and clinicians’ assessment of patients’ bother related to various aspects of cancer experience, confirming the earlier reports of discrepancy in the patients’ and clinicians’ reporting of cancer patients’ symptoms and concerns (10). As bother is a subjective experience; the results are consistent with the previous observation that there is greater discrepancy in the patients’ and clinicians’ reporting of patients’ subjective symptoms, than in the case of the “observable” symptoms (11).

The LOC results were reflective of clinicians underestimating the cancer patients’ bother in all four domains. Compared to the patients with no/mild distress, those with moderate/severe distress were more subject to clinicians’ underestimation of their bother due to difficulties associated with cancer experience. Distress as a factor significantly associated with LOC of patients’ bother is an important observation because detrimental effects of distress on cancer patients’ physical and mental health and their immune system could impede their recovery from cancer and may actually facilitate disease progression (31, 32). Whether underestimation of patients’ bother during their cancer experience actually contributes to their distress needs corroboration through further research.

It is important to note in this study that the clinicians made their recommendations for treatment of symptoms based on their own rating of the patients’ symptoms. Therefore, an underestimation of patients’ bother may have been responsible for lower referrals for further symptom management. This in turn could negatively affect patients’ compliance with treatment of side effects because distressed patients may find it difficult to process the information they receive (33) leaving them vulnerable to unfavorable effects on the treatment outcomes.

Advanced stage of cancer was a factor significantly associated with LOC in reporting bother due to comorbidities. However, the possibility of the patients viewing their comorbidities as compromising their function or their ability to receive treatment cannot be ruled out. One possible explanation for this association might be that, when cancer is advanced, more attention is paid to the disease and its treatment and co-existing health conditions might be overlooked or under-managed. This emphasizes the importance of increased awareness of comorbidities while planning treatment for cancer patients and appropriately managing comorbidities during and after cancer-treatment in those patients. Greater likelihood of LOC with bother due to cancer treatment and side effects of symptom management was observed among patients on current treatment compared to those who were not on current treatment; this fits the clinical experience of many oncologists. Because recovery from cancer is dependent on effective treatment and management of its side effects among other factors, appropriate interventions aimed at reducing such LOC would be useful.

Lack of concordance could either arise due to the factors related to the patients, their clinicians and other caregivers, or due to some unknown ecologic factors. An interesting observation of this study was that in patients with early stage disease, greater extent of underestimation was observed for bother due to cancer, side effects of symptom management, and comorbidities. A possible explanation for this finding could be less vigilance for those with early stage disease and those who have finished treatment; this may translate into fewer opportunities for a timely detection of problems such as recurrence. LOC due to comorbidities was also more likely in cancer patients with poor performance status, which also was a significant factor in LOC of bother due to cancer treatment and its management of side effects. It is possible that patients are afraid that their treatment course will be interrupted or those with poor performance status may be less able to express their concerns thus resulting in clinicians not picking up the cues. Moreover, previous literature has suggested that the focus of clinicians is usually on the illness and its management (34) while cancer patients mostly relate to the effects of their illness on their lives. This hypothesis needs to be tested in future research.

Although psychological needs have been cited by the Institute of Medicine, 2008, as an important area needing more attention (35), psychological issues facing cancer patients are, very often, not recognized. Moreover, stigma attached to psychological issues prevents patients from sharing these concerns with their clinicians and such factors are a barrier to their access to appropriate services (3). The results of this study demonstrate the differences in reporting of bother from cancer patients and their physicians and support additional research to better understand why the differences exist and to identify effective means to enhance the communication between patients and physicians. This study also suggests that LOC could be one of the many pathways through which distress negatively impacts the clinical course in cancer during treatment and the post-treatment period. Research is also needed to determine the direction of relationship of LOC in reporting patients’ cancer-related bother, i.e. whether patients’ bother causes LOC or patients are bothered because of the lack of understanding or underestimation of their difficulties on the part of their clinicians.

Implications for Clinical practice

Although clinicians strive to provide optimum care for their cancer patients and the patients’ responses are considered the gold standard in symptom reporting (36), the results of this study point to some unmet needs among cancer patients and possible areas for improvement to minimize LOC. These include: better patient-clinician communication and clinicians’ education to increase awareness about patient vulnerability and barriers to sharing their mental health issues with the treating staff. The benefits of stress management cannot be emphasized enough; another important initiative would be to increase awareness among cancer patients about the benefits of information-sharing through special outreach programs for vulnerable subgroups of patients/survivors. Greater concordance in assessment between clinicians and the patients themselves could significantly improve cancer care delivery resulting in better resolution of patients’ problems, improved QOL, as well as better compliance and improved health outcomes (37).

Strengths and Limitations

Thus far, our understanding of LOC has been based on studies such as those conducted in mostly non-oncologic population (33, 38), in oncologic patients in palliative/end of life care settings (10, 23) or in patients receiving chemotherapy. (1, 39) Although determining the level of disagreement or LOC is important, the original study was not designed to answer that question. Yet these results help to fill some gap in the literature regarding the information on LOC along the continuum of cancer experience, namely, across disease and treatment status and with regards to aspects of cancer diagnosis, its treatment, side effects of symptom treatment, and comorbidities. Each of these factors could potentially give rise to patient’s bother associated with cancer experience, its negative effects on their quality of life, and compliance with treatment.

The study utilized single item rating scales. Therefore, future validation of this one item question in cancer patients could provide a simple measure of patient’s bother due to acquired dysfunction during cancer experience. Similarly, the questions on QOL and compliance asked of the patients and the clinicians were single items which provided an opportunity to explore the potential associations that should be corroborated through future scientific inquiry. Future studies should also examine the effects of clinician’s attitude, cultural background, and patients’ perceptions regarding their cancer experience.

A limitation of this study is its cross-sectional design which restricts drawing any causal inference or to determine the direction of association between self-reported distress and LOC. Moreover, in the current study the difference between the responses of patients and clinicians was used to assess LOC and perfect agreement was defined as concordance; however, the questions asked of both the physicians and the patients were exactly similar; therefore we believe this to be a valid approach. Because the time-differences between the clinician’s and the very ill patient’s rating (returning the questionnaires days later) was not recorded, this is a limitation of this study. Earlier studies have used a variety of methods to compare patients’ and clinicians’ reports e.g. visual analogue scale for symptom severity (13) or use of dissimilar questions/measures (22). One study which used the Concerns Checklist for reporting of patients’ concerns by the patients and clinicians, reported overestimation on the part of the clinicians in regards to nine out of ten concerns (10). This does not agree with the current study results and one of the reasons could be the different approaches used. Because the majority of previous studies have used different methodological approaches (10,12,23,39), this makes it difficult to compare the current results to the results of previous studies. Different study design of previous studies could also account for the differences in the results. Current results suggest the adoption of uniform means to understand the underlying mechanisms of disagreement so that outcomes of cancer care could be improved.

Conclusion

Cancer patients are bothered by their cancer experience and this is quite often underestimated by their clinicians. Lack of concordance (LOC) is highly prevalent in oncology settings and is associated with moderate to severe patient distress and with poor QOL. This study of a large sample of cancer patients provides a broader perspective of the concept of LOC in terms of bother due to cancer diagnosis, treatment, side-effects of symptom management, or factors related to comorbidities and in terms of advanced/early stage disease and current treatment status/completed treatment. Further studies need to examine the measures and mechanisms of LOC and explore scenarios where more beneficial outcomes in cancer could be facilitated by interventions to minimize LOC in reporting of patients and the clinicians caring for them.